Health Literacy and Informed Consent Materials: Designed for Documentation, Not Comprehension of Health Research.

Minority populations with health disparities are underrepresented in research designed to address those disparities. One way to improve minority representation is to use community-based participatory methods to overcome barriers to research participation, beginning with the informed consent process. Relevant barriers to participation include lack of individual or community awareness or acceptance of research processes and purposes. These barriers are associated with limited health literacy. To inform recommendations for an improved consent process, we examined 97 consent documents and 10 associated Institutional Review Board websites to determine their health literacy demands and degree of adherence to principles of community-based research. We assessed the reading level of consent documents and obtained global measures of their health literacy demand by using the Suitability and Comprehensibility Assessment of Materials instrument. Although these documents were deemed suitable as medical forms, their readability levels were inappropriate, and they were unsuitable for educating potential participants about research purposes. We also assessed consent forms and Institutional Review Board policies for endorsement of community-based participatory principles, finding that very few acknowledged or adhered to such principles. To improve comprehension of consent documents, we recommend restructuring them as educational materials that adhere to current health literacy guidelines.

Cultural identity and patient trust among older American Indians.

BACKGROUND: Patients' trust in healthcare providers and institutions has been identified as a likely contributor to racial-ethnic health disparities. The likely influence of patients' cultural characteristics on trust is widely acknowledged but inadequately explored. OBJECTIVE: To compare levels of patients' trust in primary care provider (interpersonal trust) with trust in healthcare organizations (institutional trust) among older American Indians (AIs), and determine associations with cultural identity. DESIGN: Patient survey administered following primary care visits. PARTICIPANTS: Two-hundred and nineteen American Indian patients ≥ 50 years receiving care for a non-acute condition at two clinics operated by the Cherokee Nation in northeastern Oklahoma. MAIN MEASURES: Self-reported sociodemographic and cultural characteristics. Trust was measured using three questions about interpersonal trust and one measure of institutional trust; responses ranged from strongly agree to strongly disagree. Finding substantial variation only in institutional trust, we used logistic generalized estimating equations to examine relationships of patient cultural identity with institutional trust. KEY RESULTS: Ninety-five percent of patients reported trusting their individual provider, while only 46 % reported trusting their healthcare institution. Patients who strongly self-identified with an AI cultural identity had significantly lower institutional trust compared to those self-identifying less strongly (OR: 0.6, 95 % CI: 0.4, 0.9). CONCLUSIONS: Interpersonal and institutional trust represent distinct dimensions of patients' experience of care that may show important relationships to patients' cultural characteristics. Strategies for addressing low institutional trust may have special relevance for patients who identify strongly with AI culture.

Religio-Spiritual Participation in Two American Indian Populations.

Following a previous investigation of religio-spiritual beliefs in American Indians, this article examined prevalence and correlates of religio-spiritual participation in two tribes in the Southwest and Northern Plains (N = 3,084). Analysis suggested a "religious profile" characterized by strong participation across three traditions: aboriginal, Christian, and Native American Church. However, sociodemographic variables that have reliably predicted participation in the general American population, notably gender and age, frequently failed to achieve significance in multivariate analyses for each tradition. Religio-spiritual participation was strongly and significantly related to belief salience for all traditions. Findings suggest that correlates of religious participation may be unique among American Indians, consistent with their distinctive religious profile. Results promise to inform researchers' efforts to understand and theorize about religio-spiritual behavior. They also provide tribal communities with practical information that might assist them in harnessing social networks to confront collective challenges through community-based participatory research collaborations.

Perceived cancer risk among American Indians: implications for intervention research.

OBJECTIVE: Perceived risk of disease plays a key role in health behaviors, making it an important issue for cancer-prevention research. We investigate associations between perceived cancer risk and selected cancer risk factors in a population-based sample of American Indians. STUDY DESIGN AND POPULATION: Data for this cross-sectional study come from a random sample of 182 American Indian adults, aged > or = 40 years, residing on the Hopi Reservation in northeastern Arizona. OUTCOME MEASURES: Perception of cancer risk was ascertained with the 5-point Likert scale question, "How likely do you think it is that you will develop cancer in the future?" dichotomized into low perceived risk and high perceived risk. RESULTS: Participants reporting a family member with cancer were more likely, by greater than five times, to report the perception that they would get cancer (OR = 5.3; 95% CI: 2.3, 12.3). After controlling for age and family history of cancer, knowledge of cancer risk factors and attitude about cancer prevention were not significantly associated with risk perception. CONCLUSIONS: Perceived cancer risk was significantly associated with self-reported family history of cancer, supporting the importance of personal knowledge of cancer among American Indians. Further research is needed to obtain a more complete picture of the factors associated with perceptions of cancer risk among American Indians in order to develop effective interventions.

Perceptions of medical interactions between healthcare providers and American Indian older adults.

Cultural competence models assume that culture affects medical encounters, yet little research uses objective measures to examine how this may be true. Do providers and racial/ethnic minority patients interpret the same interactions similarly or differently? How might patterns of provider-patient concordance and discordance vary for patients with different cultural characteristics? We collected survey data from 115 medical visits with American Indian older adults at a clinic operated by the Cherokee Nation (in Northeastern Oklahoma, USA), asking providers and patients to evaluate nine affective and instrumental interactions. Examining data from the full sample, we found that provider and patient ratings were significantly discordant for all interactions (Wilcoxon signed-rank test p

Spirituality and mental health status among Northern Plain tribes.

Spirituality measures often show positive associations with preferred mental health outcomes in the general population; however, research among American Indians (AIs) is limited. We examined the relationships of mental health status and two measures of spirituality - the Midlife Development Inventory (MIDI) and a tribal cultural spirituality measure - in Northern Plains AIs, aged 15-54 (n = 1636). While the MIDI was unassociated with mental health status, the tribal cultural spirituality measure showed a significant relationship with better mental health status. Mental health conditions disproportionately affect AIs. Understanding protective factors such as cultural spirituality that can mitigate mental health disorders is critical to reducing these health disparities.

Cultural identities and perceptions of health among health care providers and older American Indians.

BACKGROUND: Differences in provider-patient health perceptions have been associated with poor patient outcomes, but little is known about how patients' cultural identities may be related to discordant perceptions. OBJECTIVE: To examine whether health care providers and American-Indian patients disagreed on patient health status ratings, and how differences related to these patients' strength of affiliation with American-Indian and white-American cultural identities. DESIGN: Survey of patients and providers following primary care office visits. PARTICIPANTS: One hundred and fifteen patients > or =50 years and 7 health care providers at a Cherokee Nation clinic. All patients were of American-Indian race, but varied in strength of affiliation with separate measures of American-Indian and white-American cultural identities. MEASUREMENTS: Self-reported sociodemographic and cultural characteristics, and a 5-point rating of patient's health completed by both patients and providers. Fixed-effects regression modeling examined the relationships of patients' cultural identities with differences in provider-patient health rating. RESULTS: In 40% of medical visits, providers and patients rated health differently, with providers typically judging patients healthier than patients' self-rating. Provider-patient differences were greater for patients affiliating weakly with white cultural identity than for those affiliating strongly (adjusted mean difference=0.70 vs 0.12, P=.01). Differences in ratings were not associated with the separate measure of affiliation with American-Indian identity. CONCLUSIONS: American-Indian patients, especially those who affiliate weakly with white-American cultural identity, often perceive health status differently from their providers. Future research should explore sources of discordant perceptions.

Patient satisfaction and ethnic identity among American Indian older adults.

Work in the field of culturally competent medical care draws on studies showing that minority Americans often report lower satisfaction with care than White Americans and recommends that providers should adapt care to patients' cultural needs. However, empirical evidence in support of cultural competence models is limited by reliance upon measurements of racial rather than ethnic identity and also by a near-total neglect of American Indians. This project explored the relationship between ethnic identity and satisfaction using survey data collected from 115 chronically ill American Indian patients >or=50 years at a Cherokee Nation clinic. Satisfaction scores were high overall and comparable to those found in the general population. Nevertheless, analysis using hierarchical linear modeling showed that patients' self-rated American Indian ethnic identity was significantly associated with satisfaction. Specifically, patients who rated themselves high on the measure of American Indian ethnic identity reported reduced scores on satisfaction with health care providers' social skill and attentiveness, as compared to those who rated themselves lower. Significant associations remained after controlling for patients' sex, age, education, marital status, self-reported health, wait time, and number of previous visits. There were no significant associations between patients' American Indian ethnic identity and satisfaction with provider's technical skill and shared decision-making. Likewise, there were no significant associations between satisfaction and a separate measure of White American ethnic identity, although a suggestive trend was observed for satisfaction with provider's social skill. Our findings demonstrate the importance of including measures of ethnic identity in studies of medical satisfaction in racial minority populations. They support the importance of adapting care to patient's cultural needs, and they highlight the particular significance of interpersonal communication for patient satisfaction among American Indians. Results will be of special interest to health researchers, clinicians, and policy makers working in fields related to minority health.

Spirituality and attempted suicide among American Indians.

American Indians exhibit suicide-related behaviors at rates much higher than the general population. This study examines the relation of spirituality to the lifetime prevalence of attempted suicide in a probability sample of American Indians. Data were derived from a cross-sectional sample of 1456 American Indian tribal members (age range 15-57yr) who were living on or near their Northern Plains reservations between 1997 and 1999. Data were collected by personal interviews. Commitment to Christianity was assessed using a measure of beliefs. Commitment to tribal cultural spirituality (or forms of spirituality deriving from traditions that predate European contact) was assessed using separate measures for beliefs and spiritual orientations. Results indicated that neither commitment to Christianity nor to cultural spirituality, as measured by beliefs, was significantly associated with suicide attempts (p(trend) for Christianity=0.22 and p(trend) for cultural spirituality=0.85). Conversely, commitment to cultural spirituality, as measured by an index of spiritual orientations, was significantly associated with a reduction in attempted suicide (p(trend)=0.01). Those with a high level of cultural spiritual orientation had a reduced prevalence of suicide compared with those with low level of cultural spiritual orientation. (OR=0.5, 95% CI=0.3, 0.9). This result persisted after simultaneous adjustment for age, gender, education, heavy alcohol use, substance abuse and psychological distress. These results are consistent with anecdotal reports suggesting the effectiveness of American Indian suicide-prevention programs emphasizing orientations related to cultural spirituality.

A comparison of colorectal cancer screening uptake among average-risk insured American Indian/Alaska Native and white women.

INTRODUCTION: American Indian and Alaska Native (AI/AN) women have among the lowest rates of colorectal cancer (CRC) screening. Whether screening disparities persist with equal access to health care is unknown. METHODS: Using administrative data from 1996-2007, we compared CRC screening events for 286 AI/AN and 14,042 White women aged 50 years and older from a health maintenance organization in the Pacific Northwest of the U.S. RESULTS: The proportion of AI/AN and White women screened for CRC at age 50 was similar (13.3% vs. 14.0%, p =.74). No differences were seen in the type of screening test. Time elapsed to first screening among AI/AN women who were not screened at age 50 did not differ from White women (hazard ratio 1.0, 95% confidence interval 0.8-1.3). CONCLUSIONS: Uptake for CRC screening was similar among insured AI/AN and White women, suggesting that when access to care is equal, racial disparities in screening diminish.

Affective interactions in medical visits: ethnic differences among American Indian older adults.

OBJECTIVE: Investigate influence of ethnicity on older American Indian patients' interpretations of providers' affective behaviors. METHOD: Using data from 115 older American Indian patients, random effects ordered logit models related patient ratings of providers' respect, empathy, and rapport first to separate measures of American Indian and White American ethnicity, then to "ethnic discordance," or difference between providers' and patients' cultural characteristics. RESULTS: In models accounting for patients' ethnicity only, high scores for American Indian ethnicity were linked to reduced evaluations for providers' respect; high scores on White ethnicity were associated with elevated ratings for empathy and rapport. In models accounting for provider-patient ethnic discordance, high discordance on either ethnicity scale was associated with reduced ratings for the same behaviors. DISCUSSION: Findings support "orthogonal ethnic identity" theory and extend "cultural health capital" theory, suggesting a pathway by which ethnicity becomes relevant to experience of health care among older adults.

Theory and practice in participatory research: lessons from the Native Elder Care Study.

Models for community-based participatory research (CBPR) urge academic investigators to collaborate with communities to identify and pursue research questions, processes, and outcomes valuable to both partners. The tribal participatory research (TPR) conceptual model suggests modifications to CBPR to fit the special needs of American Indian communities. This paper draws upon authors' collaboration with one American Indian tribe to recommend theoretical revision and practical strategies for conducting gerontological research in tribal communities. We rated the TPR model as a strong, specialized adaptation of participatory research principles. Although the need for some TPR mechanisms may vary, our experience recommends incorporating dissemination as a central TPR mechanism. Researchers and communities can expect well-crafted collaborative projects to generate particular types of positive project outcomes for both partners, but should prepare for both predictable and unique challenges.